Friday, October 14, 2011

The Leash

I got kicked out of a mom’s group, when Bud was about 18 months old and all over the place, and I was massively pregnant with Moopy. Why? Because I put him on a leash.

There exploded on the mom’s group chat a torrent of vociferous pontificating and sancti-mom-ious scolding (of me!) to which I responded with as much damn-the-torpedoes aplomb as I cold muster; they’d already ejected me, what did I have to lose?

Having moved on and found new friends, I suppose I thought it was settled. In my mind, only the most strenuously anti-mainstream folks had an issue with the leash, and the rest of us would do what we had to do to share the city with aggressive drivers, psychotic cyclists, and preoccupied pedestrians.

I see people with kids on leashes often; I thought the topic was finished. But then a friend posted this article on Facebook:

It was the only thing I’d read in a long time, regardless of topic, wherein the writer truly had no agenda; she really wanted to know if people felt the leash was a good idea, and her approach was restoratively different from what I’d experienced years earlier.

Friends who’d had kids well before I did had warned me I wouldn’t like the group I joined; too dogmatic, too crunchy, they said. But I countered, "I'm dogmatic! Maybe not crunchy, but ... it's about the babies, right?"

It turned out that in fact, the group was 100% agenda-driven, even down to what words members could use on a variety of topics, what books members could discuss, which products they could suggest… it was shocking, but more disturbing still was that the group claimed one of it’s main purposes was progress on behalf of mothers, and to improve the environment of mothers’ lives.

I had not seen any of that schism until I wrote on the chat, late one night, when we were all gratefully talking to each other from the breast-milk-saturated hot-houses of our apartments, that I’d taken to using what I call a safety harness, which others call a leash, when out walking with Bud, and my Macy’s-Thanksgiving-Day-Parade-size belly.

People freaked.

I soon learned it was not permitted to admit to using any product that “comes between the mother and her baby,” any product that the group didn’t endorse.

“You can’t talk about that product here,” one of the managers of the group wrote me privately. “It damages the group’s integrity.”

I was mortified, not only by the feeling of having my wrists slapped by another adult, presumably my equal, but also because I felt I’d been fooled; no one had asked me to take an oath or promise to adhere to anything when I joined. I’d thought the principle mission of the group was to encourage one another, and to speak up on behalf of our own and our peers’ parenting choices, in public and to family and friends; how did it make any sense for those in charge to insist on dishonesty and suppression among ourselves?

I wrote an open letter to the group in which I expressed my deep gratitude for the volunteership and sisterhood. But I also cautioned everyone that casting contradiction or independent thought as a ‘no-no’ was a slippery slope into cultishness and groupthink.

“I don’t doubt for a minute,” I wrote, “these new mothers' ability to decide for themselves weather they want to use a leash, a pump, or a unicycle. I think it's important that this organization check itself, that it doesn't get involved with the same kind of information-straining of which its [managers], and members including myself, accuse doctors, mainstream parenting educators, and marketers. The driving reason that we're all here is that we want community and information, and we're exposed enough, and sophisticated enough, to decide for ourselves what makes sense.”

The next message I received was notice that my continued access to the chat was denied.

Though that episode feels like eons ago (it wasn’t even five years,) I find myself hearing similar, if more vague, rumblings throughout the Autism community today. It takes a different tone, and there’s a lot of preemptive reassurance that comment writers don’t mean to step on toes or offend, but I best heard it termed at a panel discussion as ‘resentment across the spectrum.’

I was astounded.

At the time, my child was just emerging from the crisis that preceded his diagnoses of Asperger’s, Anxiety, OCD, SPD, and Tourette Syndrome. Life in our apartment was still volatile, sometimes, although since my son had been placed in a therapeutic school, things had really begun to improve. However, I could not imagine what about that aspect of our lives seemed enviable. I suppose I had forgotten, for the moment, my own parents’ struggles, and mine as a sibling, with my Autistic sister who came of age in the Bettelheim years. I had been so intensely, internally focused on my little family’s spate of troubles that I didn’t even consider how demanding are the lives of families whose children need much more attention and resource than my own.

For myself, the differences are concrete but less drastic, which makes the word ‘spectrum’ seem apt. While my son can’t go to regular birthday parties, for example, he has friendships, and has become able to participate in birthdays within his classroom, and to mouth the words to the Happy Birthday song and not experience an anxiety attack; that’s one small step into the expansive gray area between Autism and typicality, but it’s a big step for my particular kid, and for me.

For us, it’s also enough. For others, it isn’t.

Anxiety is just one piece of the fluid and dynamic constellation of Autism; many Asperger’s kids have it. It’s also one good lens for looking at disparities and similarities across the Autism spectrum, and beyond.

For some children, Anxiety can be debilitating, but it’s hard to pinpoint what that means. Plenty of parents would call yelling “Booo! Booo!” during the singing of the Happy Birthday song and running out of the party (yup, that was Bud,) debilitating anxiety, and it is if birthday parties are really important; but to us, they’re not, and recognizing that for my family is a kind of freedom. We just don’t go anymore.

But what if I wasn’t okay with that? What if my son wasn’t? To what lengths would I go to make his participation possible? Would I make special arrangements with the birthday family in advance? Would I create a consequence / reward context for his behavior? Would I medicate him? Would I medicate myself? And would any of that work? Is that a risk I’d be willing to take? What’s worth it? What’s it worth?

And what if it’s not about birthdays? What if it’s about self-injury, regression, illness, impoverishment, violence? What if it’s about never knowing if your child is aware that you love him?

When I used to talk with people a lot about baby care, it became evident to me very quickly that there were so many variables that one rule couldn’t possibly fit us all. So similarly, when we talk about Autism, we are talking about the constitution of individuals, beginning with their very DNA, a complexity of literally millions of elements, placed in an unending variety of contexts; families, living situations, neighborhoods, schools… I’m not even convinced that the word ‘spectrum’ really does the job.

Nothing that the parent of a pre-verbal, stimming, passive child with Autism experiences is exactly like what the parent of a hyperverbal, aggressive, insomniac Autistic child experiences, yet here we are. I’ve had or read discussions among parents whose singular goal is cure, and they describe chronic behaviors and unanswered struggles that really make us know, if we listen, why they just want this to stop, why they want Autism to go away, why they desperately need relief, and I want it for them.

It throws me, though, because I don’t need those things, my child doesn’t, and many other families whose children have any number of requirements also do not, in spite of the fact that they, and I, exist under the same umbrella as those who do.

But my child does need therapy, and lots of it. He needs a special school. And some families need much more: money, transportation, care, medication… are they, and I, not entitled to those things? Are these children not entitled to be well met, well attended, but also to just be?

In some ways, it’s a philosophical question; does Autism comprise the self of your child, or obfuscate it? Science might answer that some day, but for now, I’m convinced of certain things.

I grew up with a sibling whose profound Autism was diagnosed at the age of four, and who spent her life being schooled, treated, and medicated with some of the finest resources available, long before anyone questioned if her condition could be eradicated. Today, she’s 54 years old, and still Autistic; she has also exceeded her lifespan prediction by about 20 years, and to the best of our knowledge, she’s happy. She lives in a group home, with peers, round the clock care, and extensive medication and accommodations that make her as comfortable, capable, and connected as she can be.

My family has been lucky, now for two generations; but in the end, it’s a person at stake, a person. It’s not a dream, it’s not a mission, it’s not a set of protocols; it’s somebody’s baby.

If the advent and synthesis of support groups in our society, especially online, have taught us anything, it’s what we borrow from the original support group, the 12 Steps of Alcoholics Anonymous: “Take what you like, and leave the rest.” Many groups claim to uphold this respect of members’ individuality, yet when it comes down to looking in the mirror of ourselves in one another, the idea shatters under the weight of our judgments. When a group is overly insistent about their beliefs, welcoming and safety are destroyed. At the same time, muscling ahead, even for the sake of only our own smug fantasy of passing, amounts to being a silent bully. Products and systems and chemicals are sold to parents by means of threat all the time; do we need more fear of failure and alienation in the very places we come for solace?

No, I don't know what exactly I want us all to say; maybe we just need to be careful.

When I think back to the leash debate, what I recall most vividly was the irony, the assertion by the group manager that the leash came between the mother and the child, yet what is it, exactly, that the leash does? I couldn’t believe that she really meant I should take no choice other than to hold my toddler by the hand all the time, that I should allow him not even three feet of autonomy, that I should take the risk of his danger over his life to satisfy a prescribed set of values I didn’t even believe in; and yet she did, and she asserted it on behalf of the greater good. But I, too, am part of the greater, and my child should have a share in the good, as should yours.

Ultimately, I didn’t mind getting kicked out of the group. One day, one way or another, my kids would stop nursing, and of course they did; at over three years old, which I’m a little proud of, not because it raises me in any organizational esteem, but because I look at my kids now and I believe I see glowing evidence of the nutrition and the bond, and even if that’s just my perception, it feels good, and that helps me.

But if I get kicked out of Autism, if my son does, because he’s not Autistic enough, or because I’m not willing to go to extremes to make him un-Autistic, a convolution so dangerous and self-defeating I’m almost scared to write it, then we’re both frankly doomed.

And alone.

These are the phantoms that walk around in my head at night: what if he improves too much, and loses his diagnosis? what if Autism is broken down into subsets and only some count? if my son lost his rights, couldn't yours?

One more thing of which I am certain is that we must advocate together.

Nobody on any Autism chat has rejected me outright, though despite being late to this party I’ve already encountered my share of scoldings for what I feed the kid or how I discipline him or don’t. But by and large, chatters seem to me to go to the other… end of the spectrum. I’ve known them to remove their own postings because their words motivated a bracing discussion, but then they got scared they’d hurt someone’s feelings, and that’s almost as unhelpful; to withhold our discoveries out of an excess of gentility.

But it’s out there, the hostility, the divisiveness, the labile triage of who has to go and who gets to stay. And I guess what I want is for the doors to stop slamming.

I have dreams for my son, and they change all the time. Some days, I like to imagine him washing and rehabilitating animals who’ve been injured in oil spills; he’s been a vegetarian since he was three and can’t tolerate the idea of anyone stepping on a bug. Other days, I picture him walking the halls of the school he now goes to, as a teacher or an OT. Still others, I envision him in work much less socially demanding; perhaps he’ll garden for the parks department and keep to himself; that would be fine. Perhaps things won’t work out so neatly; perhaps he won’t work. We can’t know that another crisis will never darken our door. I just hope that I’m able enough to help him if it does. But even if I am, I won’t be doing it alone. None of us do this alone.

Maybe someone’s child will be a leader. Maybe a therapy or a technique will help him, and he in turn, will help others. Maybe I don’t like being lumped in with the grueling needs of a much more complicated family; maybe they don’t like me taking credit for their unity and strength; maybe I don’t deserve it. Maybe our griefs are nothing alike, not in depth, not in quantity, not in scope. Maybe it doesn’t matter, and maybe it does.

Autism was hard on the family I grew up in, and I ran from it, yet I’ve arrived at the very same place. My son is here. My sister is here. I am the mother, so my husband and my daughter have little choice but to remain with us. I don’t want my kids to be angry, like I was. I don’t want to be glad I’m not you. I just want to talk about it all, about all of it, and I want you to talk about it, because you’re a person, and I’m a person, and the Autistic kids are persons, and the non-Autistic kids are persons, and we’re tethered to one another, this is the leash of human connection; without it, any one of us could get lost.